About

Hi I’m Jak and I live in the north west of England. In 1994, following an allergic reaction to an anti-sickness drug, and catching several viral infections one after the other, I developed Myalgic Encephalomyelitis (M.E.). 2 years later I contracted meningitis following a meningitis vaccination for travel abroad and was bedridden, and at times critically ill, for the following 10 years – you can read about my journey with ME here. I still have M.E. but am now largely housebound but no longer bedbound.

As my M.E. improved, and my activity levels increased, my pain levels went berserk. Following a chance remark by my M.E. Immunologist that my pain was probably due to the fact that my joints were hypermobile, I researched “joint hypermobility” online and realised I had almost certainly been born with the genetic disease Ehlers-Danlos Syndrome (hypermobile type) – see my EDS journey here. I asked for a referral to a specialist Rheumatologist in 2010 and was diagnosed with H-EDS, scoring 8/9 on the Beighton Scale.

Unfortunately, that wasn’t to be the end of my medical journey. After joining some Ehlers-Danlos Syndrome forums online, searching for answers to the weird and frightening reactions I had to food and medications, I came across Mast Cell Activation Disorder and realised that I had all the hallmark symptoms (see my MCAD post here). For some, as yet, unknown reason MCAD is more common in people with either Ehlers-Danlos Syndrome and/or M.E.. I asked my GP for a referral to an Immunologist with a special interest in mast cell disease (I had to pay privately) and was diagnosed with “probable” Mast Cell Activation Disorder and definite Histamine Intolerance (due to low DAO levels).

In 2015, following an MRI scan for pelvic pain, it was discovered I had extensive endometriosis, adenomyosis, uterine fibroids and polysistic ovaries. I’ve had excruciating period pain and other menstrual symptoms since I was a teenager and can’t believe it’s taken nearly 40 years for these diseases to be identified. Unfortunately, I’ve reacted badly to hormones in the past so using drugs to control my periods wasn’t an option and although I badly needed a hysterectomy I’m allergic to both anaesthetic and pain relief so that was considered too risky. I am in peri-menopause, though, so I’m hoping that once my periods stop the pain might become more bearable (though it’s doubtful it will stop completely due to the extent of the endo and adeno).

I’m going to stop seeing any more doctors in case they diagnose me with something else! 😉

This site is my personal blog following my personal journey. It’s not an information website though I hope some of my posts are useful to others in the same position as me. I’m not a doctor, nutritionist or any kind of expert, so the best I can do is to answer any questions (which I’m always happy to do) based on my own experience – I don’t give advice because I’m not qualified to, plus I don’t know you.

I live in the middle of nowhere surrounded by sheep and farmers. I am northern and I can be blunt – I don’t mean to be harsh, it’s cultural and I can only be who I am. I swear too much, have a sarcastic sense of humour and I just tell it like it is with no frills. I do not count my blessings – there is nothing good about being sick, alone, skint and receiving zero medical support for the better part of 2 decades, so if you’re looking for a happy clappy zen-inspired blog this probably isn’t it. Having said all that I rarely do whinging – life’s too short to be miserable and I live with as much joy and gusto as my knackered body will allow. I have good days and I have bad days just like everyone else and these ups and downs are reflected in my posts.

When I was first diagnosed with both EDS and MCAD I could find little information from a patient’s perspective online, so I started blogging in the hopes that other people with my rare set of diseases wouldn’t feel as lost and adrift as I did in those early days. My blog now staggeringly has over 400 visitors a day from 188 countries – we have vastly differing personalities and cultures and I cannot please all of the people all of the time (I even get on my own Mum’s nerves some days 😉 ). If you don’t like my personality, viewpoint or style of writing feel free to jog on rather than attacking me or leaving an argumentative comment, because it’s unlikely I will change my personality and stress brings me out in hives – we’re all struggling and need lifting up much more than we need bringing down 🙂 .

Rate this:

Share this:

Like this:

70 thoughts on “About”

Hi Jak, I found you when I saw you’d liked my hypermobility post (about my appointment at UCL) so I thought I’d pop over to visit. And this is a great blog hon, so I’m very glad that I did. I love the additional inclusion of the Resources and Links page, too. Fabulous work Jak, I’m very pleased to ‘meet’ you fellow blogger 😀
I have a friend who has suspected mast cell disease (along with EDS and major allergies, amongst other things, so she’s developed wonderful knowledge on nutrition tips too), so I’m sending her over to your blog as there’s something about reading about someone else’s experiences which can be so helpful and grounding. Keep up the great work, I’ll follow whenever I can grab some time to do some extra reading, big hug and loud cheers from me, x

Thanks for taking the time to comment and really glad you like the blog 🙂 You’re right, it’s comforting and reassuring to read about other people’s experiences, especially with rare diseases like EDS and MCAD as so little is written about them from a sufferer’s perspective x

I have given you a “shout out” on my blog – my version of a Liebster award because I can’t afford to expend the energy writing or answering questions. If you want to pay it forward, please highlight 10 bloggers on your blog. If you’d like to participate even further, you can come up with 10 questions for them to answer and/or answer the questions posed by Jess or Marie (linked on my blog: http://elizabethmilo.com/2013/11/10/award-season/). Mostly, I wanted to say thank you for your detailed and straight forward writing. I love that you don’t pull any punches and think we’d get along famously. 😉

Hi Jak, I sent you a message when I sent a request to join the edsmca support group. But I just wanted to say how amazing I have found your website. It’s so well written end clear and must have taken a phenomenal amount of work. Thank you for taking time to create this amazing resource which helps people like me find their way around the maze of information on EDS and Master Cell Issues. Julie.

I haven’t read it all yet (too sore to sit here and have the figit’s right now) But It sounded like you were talking about me. I always thought Wow, I’m really flexible and coordinated! boy do I wish I could bend your ear a bit. Love the info

Please grant permission to include your picture of forth finger hypermobility in an article I am writing for dental hygienists in RDH Magazine. Many RDHs have hand problems only to find out that they had an undiagnosed hypermobility condition. Thank you. If permission is granted the link to this site will be included in the article.

Thanks for the request and yes you have my permission to include the stated photograph in RDH magazine so long as a link to the article is included. If you need the photo in better quality just let me know and I can email it to you.

Just wondering, what was the anti-sickness drug that you had an adverse reaction to? Your story sounds very similar to that of many “floxies” – people who are suffering from an adverse reaction (to put it mildy – the reaction is the induction of chronic multi-symptom illness) to fluoroquinolone antibiotics. The most commonly prescribed fluoroquinolones are Cipro/Ciprofloxacin, Levaquin/Levofloxacin, Avelox/Moxifloxacin and Floxin/Ofloxacin.

The anti-sickness drug was Stemetil, the active ingredient of which is prochlorperazine. Oculargyric Crisis is a well recognised side-effect of these kinds of drugs which are dopamine antagonists (eg. Domperidone, Maxolon). I don’t think I’d been prescribed antibiotics before getting M.E. – at least, none that I can remember.

I came across your fantastic blog after googling low histamine diet tips.
I was diagnosed with ME but became ill not long after the meningitis c vaccine when I was around 11 (I’m now 25), but I was bedbound and hospitalised for a very long time (I gradually became worse). I was wondering, did you become unwell straight after the vaccine or gradually or what? I hope you don’t mind me asking. I only ask because after having immune tests by Dr S they want me to have four vaccinations and to check my response as I am showing immune problems – but I’ve been told it’s unlikely it was the meningitis c vaccine that made me ill as it wasn’t sudden me becoming ill. Just wondered what your own experience was like? I also have been diagnosed with eds 3, pots & my biopsies showing high levels of mast cells.

Thanks for the lovely comment – glad you’ve found the blog helpful and you can ask me anything you like, though I can’t guarantee I’ll always have the answers!

I’d already had ME for 18 months when I had my meningitis vaccination. I was moderately affected before the vaccination. I had the vacccination 5 days before I travelled to Kenya, and went down with meningitis 3 days after I got there. My GP says it’s impossible for the vaccination to be implicated in what happened, but I totally disagree. No-one has any idea what’s happening with the immune system when it comes to ME – not one clue. So in answer to your question the meningitis infection happened 8 days following the meningitis vaccination.

I’m gobsmacked you’re being advised to have any vaccination, let alone 4 vaccinations, if you have a diagnosis of ME. I know hundreds of people whose ME started after a vaccination, and they were healthy before-hand. I also know dozens of people, like me, who had a vaccination whilst already having ME and it made them 10 times worse. I personally wouldn’t have another vaccination if my life depended on it!

I’m also amazed you’re being offered vaccinations if you have mast cell disease. Vaccinations are known to be mast cell de-granulators?! If it were me (and I can’t offer you advice as I don’t know you or your medical history and I’m not a doctor) I would take any decision to have vaccinations VERY seriously indeed – this comes not only from my personal experience but from my experience of being on the board of a UK charity for 14 years and coming across many people with ME made worse by vaccinations. It may be it’s the best thing to do for you personally, but do make sure you’re well informed of any consequences before you go ahead.

I see, that is terrible- I am convinced the meningitis c vaccine tipped my immune system over the edge or something as I had never been ill before, I also am allergic to tetanus and haven’t had any vaccines since the men c one. It’s Dr S (mast cell Dr) who wanted me to have four (!) due to my results, needless to say I declined despite I am at risk due to my results. But my urologist wants me to have the pneumovax so they can test my antibodies afterwards to see if I can qualify for IVIG (I have a chronic bladder wall infection that we can’t get rid of). I’m very concerned about the vaccine and not sure where else to get more advice from, as you know there are no really good ME experts who probably even believe vaccines can be a real cause.
It’s a nightmare trying to decide what to do for the best and will they take any responsibility for me becoming completely bed ridden again, like what you went through yourself (been to hell and back). Again, I appreciate your reply, thank you 🙂 Becca x

A member of our little support group is having issues with a chronic recurring bladder infection – I know they can be awful to get rid of when you have mast cell issues 😦 You’re more than welcome to join the group if you’d like (it’s via email) – there are only 11 of us and it’s not busy but everyone is really nice . Here’s the link just in case you’d like to: https://uk.groups.yahoo.com/neo/groups/edsmcasuk/info (click on the join group button). Jak x

Thank you again. My daughter was recently ‘invited’ to have about four vaccines at once. She had an eye appointment on the same day so we had a good excuse not to go (although my gut said not to take her anyway). I also wouldn’t give permission for her to have the cervical cancer jab as I thought it wasn’t necessary at her age (14). You have made me feel much better about my decision x

Jak,
My name is TIna and I began a blog for those with physical challenges at TheZIPPYZEBRA and am hosting a “link-up” party for those with chronic pain, invisible illness and physical challenges to share articles and spread the word. The linkup is open until Sunday and as I just launched it 1 hour ago the participation is low but I am reaching out to help others and wanted to know if you would like to participate.
The linkhttp://thezippyzebra.com/?p=471

Thanks so much for the invite – sounds like a great idea 🙂 My energy is spread very thinly atm and I’m struggling to keep up with the things I’m already doing, but I’ll bookmark it and keep it in mind for the future. Jak x

Hello,
İ’ve read about your symptoms and drug reactions at your blog.so i realised that i have alot of symptoms that are the same as yours.and i have extreme chemical intolerance to almost all meds and to most supplements. My ilness triggered by antibiotics about 17 years ago.i developed extreme intolerance to medications.after that treatment my neurological symtoms became permanent and never recovered.
I tried to take various medications,but with medication my restlessness get worse and unbearable so i had to quit all of them.
I’m housebound mostly bedbound for years.most unbearable symptoms are severe inner restlessness and agitation which get much
worse with meds.severe fatigue,severe shortness of breath and
digestive symptoms which also get worse by most drugs.do you have severe restlessness,agitation,extreme anxiety caused by most meds and supplements.the anxiety,agitation or restlessness isn’t mental or emotional.it’s a physical thing in my brain.do you have the same reaction to almost all meds and to a lot of supplements? If you have
severe restlessness and agitation induced by most medications so we have the same ilness that whatever the name it has.
This inner restlessness or agitation is the culprit.other symptoms
are not the culprit.because a lot of people may develop other symptoms that a lot of diseases share those common symptoms.e.g.
Cfs,M.E.,MCAD,Fibromyalgia,etc.
I read alot of posts at health forums.lots of people talk about their med sensitivities.they claim they dont tolerate most meds,but when i read their entire posts i realise that they tolerate vit D and magnesium or a med that i can’t tolerate.and they dont describe their symptoms as severe inner restlessness,akathisia like reaction,panicy feeling or extreme anxiety that caused by meds and supplements.they
say medications cause only body aches,blurred vision,nausea,bloating,brain fog,headaches,migraine,arthritis etc.but
I can’t tolerate most meds because of severe inner restlessness.so this reaction is unbearable,the worst feeling ,like living in hell.restlessness,but neurological in nature,not psychological anxiety or panic.
I’ve been looking for patients who experienced the same chemical intolerance.because i need to find meds that i can tolerate.i tried different meds in the past.only a few meds didn’t give me any side effect.for example rocephin doesn’t make me agitated.i can tolerate it well.(my mom and my affected siblings also tolerate it very well).my ilness runs in my family from my mom’s side.
By the way,i have some strange symptoms you also have.for example: intermittent sore throat can be brought on by too much mental activity.if i’m on the computer for too long i start to feel worse,and i get a sore throat. i don’t vomit and have good appetite although i have chronic nausea,i feel sick and hungry at the same time. Strangely i was feeling well just before i get a cold.but a few days later when cold symptoms started i was feeling worse.chronically coated tongue(get worse by medications). chronic constipation from very early childhood. Scally skin on knees and shins. intermittant esophageal spasms(trouble when i swallow.food gets stuck in my esophagus). Extreme sound,light and TOUCH sensitivity,chronic low blood pressure becomes lower during menstruation.my condition (weakness,restlessness,feeling garbage) also worsens during menstruation. Laxatives get my condition worse,but dont affect my defecation cycle. Dry,unproductive chronic cough that get worse by medications. Despite severity of both lower and upper gi issues i’ve never suffered from gas. I also react badly sedating meds such as diazepam. Constant chest tightness(worsens by medications). When i react to any medication or supplement or when i get worse, my bood pressure plummets.i go ashen,feel drastically ill,and on the verge of collapse and develop instant tachycardia.other symptoms appear later. I have had the same reaction to most chemical substances,but some reactions are milder than others.some have been so severe.for example my affected family members and i all react mildly to the certain med or react severely to the other certain med. i only react to drugs taken orally
or sistemically(my sister had reacted once to a topical med).but ,not to any other chemicals like paint,parfumes,cleaning products. I have the same reactions to foods that i have to drugs,albeit a milder version.
So ,i concluded that we have the same underlying disturbance in the central nervous system.not because of the above symptoms,but because of the severe inner restlessness and agitation induced by most medications and supplements.
If you’d like to email me, i will write about my family experience of the illness and medications.
Hope to hear from you soon,
Mary

I’d love to email you to discuss but sadly I’m just not well enough to email my blog visitors individually. I have over 350 visits every day to the blog and just don’t have the energy to be able to email people – I hope you understand.

You certainly have a LOT going on there. In answer to your question, yes I do have agitation as a symptom when I have a drug reaction – sometimes mild, sometimes severe depending on the drug and how strong the reaction is. I only react to oral and injected rugs, not to topical and not to other chemicals, eg paints, fumes etc.

I can currently tolerate some antihistamines (not all), but do react to most drugs really. Also react in just the same way to supplements, eg. B12, magnesium and even herbs like camomile and valarian in herbal tea blends.

However, the agitation is only part of the anaphylactic reaction for me – once that’s passed the restlessness and agitation does go (though it sometimes take several weeks for my reactions to pass!). So if you’re having agitation all the time, despite not being on any drugs, I’d say we differ there. I also disagree that my symptoms originate from the nervous system – I have mast cell disease, which is an immune disorder. If you haven’t already, do read my Canary post for more info on how mast cells work and their relationship to the nervous system https://mastcellblog.wordpress.com/2013/11/12/canary/

When I was eating high histamine foods and reacting, my symptoms included anxiety rather than agitation. Anxiety is a very well recognised symptom of anaphylactoid reactions from either Histamine Intolerance or Mast Cell Activation Diseases.

I’m no expert so can’t give you advice, however if I were you I’d definitely be researching histamine and mast cell disorders (particularly if other family members have the same symptoms, as mast cell diseases can be hereditary). Histamine acts on neurotransmitters in the brain, which is why some antihistamines make you drowsy – they block the stimulating effects of histamine. Histamine has been implicated in both panic/anxiety disorders and other mental health illnesses such as psychosos and schizophrenia in some recent research studies. Histamine overload can absolutely cause agitation purely through its physical (as against psychological) effects. It definitely caused me to have depression.

Despite my symptoms improving, and the fact I no longer have acute anaphylactic reactions, I do still live with daily anxiety (though not daily agitation or restlessness). It’s easier to deal with though now I know what the cause is, and that I’m not going nuts! You’ve given me an idea to do a blog post on this aspect of Mast cell disease, which I’ll do when I have more energy.

Hi Jak, I just wanted to find out how to make contact with you as I have been ill with M.E, on and off and to varying degrees for 20 years now. yesterday a rheumatologist diagnosed me with EDS type lll – although I am not particularly hypermobile, and I think, as does the Rheumy that I may also have MCAS. Feels pretty lonely having these three diagnoses together and I am mainly housebound and use a wheelchair for short trips out. No proper DX for the MCAS yet, but hoping to get there – immunologist said my mast cells were definitely activated due to drug reactions over the past 6 months, but wouldn’t consider Mast cell diorders. The rheumy came up with it without me even prompting her and is testing tryptase. got to go… will read more of your`

Really sorry to hear you’ve joined this trio of diseases club, but at least you have an EDS diagnosis now and it should help you in gaining the correct management and treatment advice.

I’m so sorry but I don’t feel well enough, or have the time, to correspond privately. With over 300 visitors to my site every day I’d just be inundated 😦

If you’re in the UK, there is an email support group for people with MCAS and EDS here https://uk.groups.yahoo.com/neo/groups/edsmcasuk/info. Several of the members also have ME. All the members were diagnosed by Dr Seneviratne for their MCAD (as I was) and will be able to help you if you’d like to see him.

Thanks Jak, for taking the time to reply – sorry you are so ill right now – I know what that’s like! Unfortunately having the EDS diagnosis is not going to get me any help – the Rhuemy gave it as a throw away diagnosis as I was leaving the room and didn’t seem to think it was that important! I also live in West Wales, which has no provision for EDS diagnosing and help and we are not allowed to travel to England for appointments.

Now faced with the task of trying to discuss this all with my eldest daughter who is much more hypermobile than me, and has a tentative M.E diagnosis. I have spoken to Dr S’s secretary and unfortunately they can only see me for the testing etc in central London and I don’t think my health is up to that kind of journey, even in a car and I react so badly to car fumes etc that I try and stay away from central London. Someone else mentioned a professor in Southampton to me, I wonder if anyone who reads this blog may have heard of him?

Thanks for the links to the groups – I will have a good look at them!
Take care. x

I know how hard it is to get to see the right people. I’m in Cumbria and for 20 years the furthest I’d travelled was 30 miles to my nearest city, then had to face a 300 mile journey south to see Dr S in London on my own I also travelled 100 miles to Manchester to see an EDS specialist for my diagnosis of Ehlers-Danlos. Both trips took weeks to get over. You could try ringing EDS UK and asking if they know anyone good to see in Wales.

If there is no specialist provision you should legally be allowed to request an out of area referral – look into it if you feel that’s what you need.

I know the situation in Wales (like Cumbria) is terrible. I have a friend with very long standing ME who is currently trying to get an EDS diagnosis in Wales – I could ask if she would email you if you think that might help, as you are both in a similar position? Like you she is also almost certain she has MCAD, and her daughter is also looking into getting an EDS diagnosis.

Thanks for the response – yes might be nice to be in touch with someone going through the same thing in Wales. I have been reading your excellent blog and leaving comments all over the place – please don’t feel you need to answer them all I know how hard to it with M.E – I have already spent way too long reading on here… TC X

About the Oxford clinic – would have been ideal for me as my mum lives nearish to Oxfod, but Dr S can only see you there – cant do any testing. So you still need to travel to St Mary’s for the testing anyway (might be useful info for others).

Since a decent amount of people appear to be clicking to the What Is M.E. page from here, I wanted to let you know I was simplifying the url (for easier remembering) to “arainbowatnight.com/whatisME” in case you wanted to change the links. 🙂

Hi Jak,
I’m so glad that you’re sharing so much wonderful information. I was diagnosed with hyper mobility in 2015 and really couldn’t find much information. I’m also allergic to everything except 11 out of the 122 skin pricks they gave me. At least my two favorites, coffee and tobacco, were part of the 11, so thank god for small favors. I’m working with an immnuologist now, so here’s hoping she can figure this out. After the hyper mobility diagnosis I found out that dupont poisoned me when they dumped toxic chemicals, pfoa, into the ohio river for over 40 years, which contaminated the water supply of 8 counties. I am of the opinion that my severe reactions to everything from food to medication is due to my genetics and industrial poisoning. The reason I say this is that I was a very healthy child, I grew up in hawaii, was not allergic to anything. Then I moved to West Virginia and drank, ate, and bathed in poison for almost 5 years. I began to have symptoms less then a year after my arrival, I was 22 at that time. It is not completely out of the question that my theory could be correct considering the industrial world in which we live and about a third of water samples taken from accross the US was contaminated by toxic chemicals or heavy metals. I am not informed as to the quality of the water supply within your area, but this chemical I was poisoned with has an acceptable limit within Americans of 11 nano grams , within me it is 2.5 milligrams. Before I knew any of this though, I had severe stomach problems, I was never normal. I conducted a great deal of research and found the problem could be caused by an overbloom of yeast within the digestive tract by the administration of antibiotics that kill the good bacteria as well as the bad. I got my doctor’s to prescribe me 200mg of diflucan for 6 months and ate foods high in probiotics. Since month 4 I haven’t had any stomach problems, and been like clock work, unless of course I eat too much ice cream, but that’s my own damn fault and I know when I’ve done it to my self. Thankfully not too often.
I really look forward to reading your writings in detail and since you’ve shared so much to help others I figured I could share what has helped me, it’s not much, but I know stomach problems can happen at the worst time. Even though I am still in pain with all the other issues, one less is a wonderful thing. I firmly agree that You’ve got to look on the bright side of life, and take things as they come. One could drive themselves crazy other wise, and I don’t think I’d enjoy life that way at all…:-)

It must be incredibly difficult to live with so many allergies though the fact you’ve tested positive on skin prick testing kind’ve rules out Mast Cell Disease, which isn’t an IgE mediated reaction (ie not an allergy), so hopefully that’s good news.

My issues are genetic and I’ve had symptoms since the day I was born – they’ve just gotten much worse the older I’ve become. Luckily I live in a very rural area in the UK with no industry to speak of – it must be dreadful to not be able to trust your own water supply 😦 I’m delighted to hear you havemanaged to sort your stomach issues out – as you say, one less thing to deal with.

All I can say is snap! I have eds, my alcoholic mother died of veds 53,but it still took me years to get a diagnosis that wasn’t fibro, or hypochondriac. I wonder too about classical crossover due to my hands. I have more lumps n bumps than you! It struck me when I was 42. I know I have mast cell disorder but can’t get anyone to diagnose this (it’s just uticaria with angioedema – never mind your breathing n swallowing probs, just use more inhaler) your blog is a breath of fresh air thank you.

So sorry to hear you’re part of the club Alex, it sucks. The only person I’d recommend seeing re MCAD in the UK is Dr Seneviratne but he isn’t funded to treat it on the NHS and its’ very expensive to see him privately 😦 Jak x

I just want to say a massive thank you for your amazing and comprehensive blog the information has been and will be invaluable to me…I have just been kind of dignosed with Histamine intolerance via a clinic at St Mary’s hospital . I have been unwell since age 4 years with multiple allergies (I was going weekly to the UCHL from age 7) I then developed M.E and fibromyalgia in my early teens then a whole raft of other things such as knee dislocations resulting in surgeries, endometriosis, interstitial cystitis, severe diverticular disease resulting in a sigmoid colostomy and ileostomy..I then was diagnosed with HEDS and POTS at the ripe old age of 45 which explained lots, I then needed a lumbar spine decompression 2 years ago and in Feb 2015 was diagnosed with breast cancer which was HER2+ (a protein mutation that can be triggered by stress or a virus and low immunity) I have just finished my trestment including a double mastectomy. Strangely I was the one person who felt great on the long chemo treatment which lead my oncologist to suspect my M.E symptoms were caused by an problem with my immune system – I feel dreadful now after the immuno suppressant drugs have stopped. I am attempting the low histamine diet as well as the double dose of ceterizine and ranitadine I am also extremely oxalate sensitive..I put on 15 kilos from the cancer treatment as I was on steroids for 6 months so hopefully it will help that too….this whole illness from age 4 to now at nearly 52 has wrecked my life, I couldn’t work despite having degrees and rely on benefits and we all know how dehumanising that is particularly in this country (UK) at the moment. Anyway I just wanted to say thank you again because your blog is the most useful thing I have found on here….

OMG I can’t believe you’d had to suffer through all that 😦 I can’t imagine and am in awe at your strength.

I’m not surprised you felt better with the chemo. As I state in my Canary post (https://mastcellblog.wordpress.com/2013/11/12/canary/) I think M.E. is a type of mast cell disease. Cancer drugs are sometimes used to treat Mast Cell Disease, so it stands to reason they would help in M.E. I know other people who felt better when they were being treated for cancer. I personally feel brillilant when I’m coming down with a cold or other virus because my immune system starts to act “normally” and I’ve heard the same thing from other ME patients.

I’m so glad you’ve found my blog useful. At least it’s good to know you’re not alone, which is how I felt for years as I didn’t know anyone else with my triad of diseases.

Great work! Just a quick note about Luteolin & Quercetin. Unfortunately it is not Oregano that has the highest quantity of Luteolin but “Mexican Oregano” or Lippia graveolens which is different from Oregano or Origanum

You are absolutely correct Andy, thanks for pointing that out – I shall amend on my Luteolin page. It’s difficult to get mexican oregano in the UK so it would have to be bought online from a specialist shop I think, rather than in a supermarket. Jak

“I’m going to stop seeing any more doctors in case they diagnose me with something else!” That made me LOL because I feel exactly the same way. I love your sense of humo(u)r about all this. Some days I think it’s all I have to keep me sane because obviously the universe hates me and all… 😉

Hi Jak, I am glad I found you. I too live in the UK and have been told I have Joint Hypermobility Syndrome. Each day is painful but I am relatively fit and able. My condition affects me everyday and I am learning and teaching my doctor as different, random things happen to me. Not having a fellow sufferer to chat to about it is the hardest thing for me. I have started a lifestyle blog which I use as a platform to dip in and out of my problems – mainly to get them off my chest and in the hope that someone out there also understands me! I don’t know about you but I am so confused about what doctors say and don’t say that sometimes I wonder if they even know what is going on! x

Sorry to hear you’re in the hypermobile club. Unfortunately most Doctors know nothing about HMS or EDS, which I know is very frustrating but they just don’t have the right training in med school sadly. Have you visited the Forum at the HMSA – it’s excellent and you would get to ‘chat’ to other sufferers who totally understand your disease http://hypermobility.org/discussion/

Good luck with your blog – mine has been so useful in offloading my problems, but also in learning from my readers.

Hi Jak! I swear I’ve read your stuff before, but for whatever reason (brain fog????) I’m like “whoa, I Love her site and writing style! !!!” Whoohoo!!!!! I have a FB page Misunderstood Zebra. Mainly just try to share informational articles and stuff. I’m going on 3 years with “we think it’s MCAD for sure….and you’re crazy psychosomatic need a psych ward if you think you have EDS.” Ugh…… so anniying!!!!!!!! I’m outside of Chicago! I’ve been off the Ranitidine /Zantac 300mg for almost a year because of money, and in the middle of the night I was like”Ohhhhh no!!!!! Not only for my MCAS, but like 20 some yrs ago I had some bad duodenum “flares” and again 10 yrs ago, and well, i am pretty darn sure here we go again! My best friend of 34 yrs just died 2 weeks ago, and I think body is finally like “alright, NOW we need to release and relax” hence everything suddenly flaring. (I’m only 38. Quite the loss 😦 and boy was he a ‘rare disease’ patient himself!!!!). Anyhoo, just figured I’d give you a shout out again and thank you for sharing your journey with other Zebras!!!!! Perhaps we’ll meet on FB or even in person some day!!! -Beth

First I wanted to thank you for your blog. One of the first things I did was peruse and immediately download your recipes and shopping list. How generous you are to offer them. I’ve researched a bunch and your blog really stands out to me as fact-based, real and funny to boot. My 11 year-old son has Celiac, EDS-hypermobility, Asthma and allergies and I’m hoping making this histamine connection will turn out to be the missing link in a lot of this. Your recipes will be a great start and I thank you sincerely for them.

I’m still going through the rest of your info. but do want to share that my son’s asthma seemed to have been helped radically a few days ago by just breaking into a pomegranate and eating about a third of the seeds. It sounds oversimplified probably, but he’d had an ongoing asthma issue for about a month requiring an inhaler every 3-4 hours since getting a cold which is a trigger for him. In the past he’s never gotten out of that pattern without a Dr. trip and a course of steroids. Never. I happened to have bought a pomegranate for the first time in memory and just decided to try it with no knowledge of its benefits. After having it I saw improvement within 8 hours to a greatly reduced need for his inhaler. And it took me about a day to make the connection and I have to say we’ve been hitting them pretty hard since and seeing continued improvement.

I know you’re interested in that which is study-proven and I did find many medical studies on the benefits of pomegranates. I personally found it odd that so many studies had been done on a food. I figured for so many studies to have been done there must have been a ton of clinical evidence for some time and that seems to have been the case. In looking further I found that pomegranates have natural antihistamine and anti inflammatory properties. In our situation, we had just started looking at the possibility of Mcas for him and are currently waiting on test results but I wanted to mention our experience since it’s something you or your blog readers might want to try since it seemed to have had a pretty powerful effect for us and it’s sure an easy thing to try. Thanks again.

Hi. Thanks for taking the time to comment 🙂 Really pleased you’re finding my blog helpful though sorry to hear your son has so much to deal with, that must be incredibly difficult at such a young age. Brilliant that pomegranates are helping him! Some of my readers seem to tolerate them well, while others don’t. I used to drink POM juice every day, then for some reason my body revolted and I had to cut it out. MCAD is such an individual disease, what one person can tolerate another person can’t which makes it really difficult to manage. On top of that, I can tolerate something for years then all out of the blue will react badly to it 😦 I wish you lots of luck in finding answers for your son and working out a diet which works for him. Jak x

Thank you so much for your post! It has helped me in my research for answers to my current symptoms. Mast z elk disease is hard to understand for me at this point. You made it easier and I appreciate that!

You and I almost sound like twins, lol. Except that I DO count my blessings, lol. After almost dying several times from burst cerebral Aneursyms due to Ehlers-Danlos Syndrome ( you can see my story if you’d like); I’m very grateful and blessed to still be alive and able to see my grandchildren and get to know them.

However, I do understand also how difficult it can be on a daily basis to be happy with these bodies of ours. I’m going through a very difficult time right now physically due to what I think may be MCAD’s. Working on getting a diagnosis and treatment. Sounds like you’re way ahead of me on that.

I wish you were local to me and we could chat. Sounds like you have lots of info I may find useful. It’s sad we have to be the patient AND the doctor in so many instances! I’m so tired of having to diagnosis myself then getting myself to the right doctors before I can get a true diagnosis and treatment! That usually ends up involving having to educate healthcare providers. It’s just exhausting when you already have so much to deal with!

Thanks for taking the time to comment Sarah Katherine and I’m so glad you’re finding my blog helpful. The aneurismys sound terrifying 😦 I remember how scared we all were when my Mom had a collapsed lung all out of the blue in her forties (due to EDS we now presume), but if that had happened multiple times it would have been so much worse.

I totally agree about how exhausting it is when you have to be your own researcher, specialist finder, advocate, health care educator etc. on top of already being ill, when all you need is someone to advocate and take care of you for a change! I sincerely hope you can find some help with your MCAD symptoms, it’s not easy.

Thank you so much for sharing your experiences, it’s been so helpful reading it! I’m just piecing together the jigsaw myself of possible MCAD and Ehlers Danlos – just waiting on specialist appointments – have had to go private too after a decade of being looked at by doctors like I’m mad!! Was diagnosed in 2008 with M.E.. but it’s so much more than that! Also diagnosed as hypermobility but to date everyone (doctors/physics) have said it ‘ just means I’m a bit bendy’! Praying for some kind of answers soon as now unable to work yet again because of it! Thank you for helping me realise I’m not alone (or crazy lol!) and hope your good days outweigh the bad!

Thanks for taking the time to comment – your experience so far sounds just like mine. So great to finally realize that the doctors are hopeless and you’re not bonkers and your symptoms aren’t normal and there are other people just like you out there in the world isn’t it?

Lynda have you ever taken Cipro or Levaquin? It was Cipro that triggered all my EDS and MCAS symptoms to manifest. Some drugs seem to flick the genetic switch. It causes “Fluoroquinolone related disability” and there is a very good Facebook Group called the Fluoroquinolone Toxicity Group. Anti-malarials can also have the same effect.

Was the allergic reaction to the anti-sickness drug an extrapyramidal reaction or more conventional reaction like urticaria/anaphylaxis?
I had a extrapyramidal reaction to metoclopramide that has left me with neurological problems and I display some of the symptoms of EDS. Wish I’d known this beforehand.

The reaction was an oculagyric crisis so more dystonic than anaphylactic as my eyes rolled to the back of my head, though of course my breathing was also compromised. Really frightening as you obviously know 😦

So similar then. I did wonder. I have dystonia and akathisia a year later and sensations coming from my ligaments and stomach that causes an agitation so intense it is bordering on violence.
David Healy lists 500 drugs that can cause akathisia. If you have this kind of reaction before I assume you are suceptible, but I react to many things, including antibiotics, painkillers and antihistamines. Just for your awareness. I had many minor drug reactions before this major one!
I had heard that there is a relationship between akathisia and connective tissue disorders.
Hopefully my posting on here will save someone.
Akathisia is so bad for some people, they commit suicide.

Hi Jak,
I think you have saved my sanity. I’ ve had a 30 year stint of CFS/Fibro and finally my histamine bucket has overflowed (lucky me) although now I know what it is I think it has occurred before about 5 years ago when I eliminated more foods than I did the first time, which triggered horrible stomach pain and D and I now realise are ‘histamine’ foods. My IBS which I have had since 12 has settled down hurrah I’m 59. But my allergy symtoms normally only triggered by dust, pets, mould and pollen have gone mad and I have to put this down to a chocolate and sauerkraut overdose. The chocolate because it was Christmas and everyone should have a treat!!! WRONG! The sauerkraut and pro-biotics to aid the horrendous C. When I’d got rid of the D. Anyway back to my sanity. Your reflections on low histamine diets and actual research and with stated quantites thank you. I feel I can make an informed choice. I have got the Beginners Guide to Histamine Intolerance and that is the list I had plumped for but your notes and detailed results made it all seem so much more concrete so thank you from the bottom of my heart. BTW my beloved dog was called Bertie sadly he died a few years ago and I miss him everyday.

Good morning! I am so grateful to have found your blog, as it truly feels like I am reading my own journal that someone else has put into words. It’s a good thing I’m not wearing makeup lately, because I have had a constant stream of tears while looking through your posts. I am terribly sorry that ANYONE would feel like this in their own body, but in a strange way, there is a sort of strength that I gather from knowing that I am not the only one who experiences these things. I have been battling hives for the past 3 weeks, and remembered that years ago, an alternative health physician suggested that I might have something called Mast Cell Activation Syndrome. At the time, so many doctors were throwing diagnostic words at me, that I simply couldn’t digest it all. I have HEDS (along with a long list of other wonky things), and my daughter has HEDS and POTS. We were diagnosed by a geneticist, which was validating (at last someone didn’t think I was making this stuff up) but also very disheartening. When it occurred to me that this isn’t going to be ‘healed’, I became very discouraged, and I’ve had a hard time pulling out of that. Reading your blog this morning gave me a renewed sense of strength and hope. Thank you so very much for sharing your journey.

I’m so sorry you’ve found yourself in this situation, but glad my blog has been helpful. It’s so reassuring when you find other people dealing with the same issues as you – half the battle is knowing you’re not alone.

I hope it’s given you hope to know that I’m now living a stable life despite all my conditions. Following a low histamine diet has been hugely beneficial, and resorting to antihistamines etc. when needed helps keep acute symptoms at bay.

Welcome!

Hi. Thanks for visiting my Blog. Posts are listed newest first, but if you’d like to start with my first rambling written in 2013 click here. I’m not a mast cell or EDS expert and have no medical training. I’m just sharing my own personal thoughts and journey. This isn’t a forum, more a diary, but polite, respectful comments & questions are welcome – click the ‘leave a reply’ link under post titles or scroll to the end of each post and use the comments box.

Email Subscription

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 887 other followers

Archives

Archives

Categories

Categories

Copyright

All content on this site, including recipes and photos, are copyrighted to bertieandme. If you want to reproduce content please ask permission by commenting on any post or page. Alternatively please link directly to the original content.